Speaking to all of these people about Alex, and what our family has gone through was emotionally draining. As I looked at the tears welling up in these strangers eyes, I knew it was worth it. Alex's story was hitting home with them. My hope, is that they were inspired enough to help raise funds for LLS.
After that meeting, my head really wasn't where it needed to be, and I spent 20 minutes trying to find my car in the numerous parking garages surrounding the hotel.
Finally, with panic starting to set in, I rounded a concrete wall and found my car - right where I left it two hours earlier. The one thing I couldn't find, though was the ticket to get back out of the garage. Sixteen dollars later, I was on my way up the hill to Doerenbecher to join Eric and Alex for the all day chemo session. Eric had driven Alex up the hill to start their day at 8:30am.
With the aid of my GPS, I found my way from the hotel to the hospital without incident. Since Alex was not able to eat after ten o'clock - I ran by the cafeteria to hold myself over for the day. Once the elevator deposited me on the 10th floor, I found Alex and Eric playing "Nerf darts". The rules? No hitting nurses. Only doctors.
Dr. Stork came in, and talked to us about the road map for the next 57 days, and went over his medications. Then, she had a rousing dart fight with Alex before she continued with her busy day.
Soon, the Bone Marrow Transplant (BMT) doctor and coordinator came in to talk to us about the timeline. It looks like Alex will be admitted around August 15th, with the transplant 8 days later. This is just an estimate, since they have to work with the donor's schedule too.
We found out that the two perfect matches are both female, which means, Alex will end up with not only their blood type, but with XX chromosome blood too - just fascinating!
Our discussion with the BMT team went on for over an hour. We learned a whole lot - however, this is what was running through my head all night long.
Infertility
Bone issues (not growing all at the same time)
Multiple organ failure
Host vs. graft disease
Graft failure
Full body radiation
Mouth sores
Feeding tube
Nausea
Liver failure
Kidney failure
Cognitive issues
Unable to go to school (possible entire year)
Removal of his Port
Placement of a Hickman catheter
Viral Infections
Bacterial Infections
Fevers
Exhaustion
Rashes
Death
I'll go into detail about some of these topics in another post. I'm just overwhelmed - in order to save our son, from a secondary cancer, caused by the cure from the first cancer, we essentially risk his life to save it...
After the Cyclophosphomade, Alex had to be hydrated for four hours. In the meantime, we walked over to the procedure room to get his LP (lumbar puncture), to put Methotrexate in his spinal fluid and brain. He kept chanting "it's not going to hurt?, it's not going to hurt...until he was unconscious.
I don't even remember walking to the pharmacy to pick up the latest poisons to administer at home, but I ended up there, and listened while the pharmacist explained how to inject Alex with the Cyterabine. She confirmed the shortage of this life-saving drug, and my heart was heavy knowing that we were lucky to get it at all.
Wandering back up to the 10th floor, poison in hand, I walked back into Alex's procedure room, and was shocked that he was already awake - groggy, silly, goofy, but awake.
After devouring some saltine crackers, we had to hurry up and wait for Alex to get more Zofran (to help with nausea), and then get his final Chemo of the day - Cyterabine. We finally walked out of the clinic about 5:30pm.
A quick trip to the cafeteria, and a chocolate ice cream cone later, Alex fell asleep on the drive home. I pulled into our garage at 6:20pm. Eric carried a sleeping Alex to the couch upstairs, and I was greeted with a huge smile and loud "Mommy!!!!" from Tessa.
My day wasn't over, and I knew Tessa wasn't going to let me out of her sight again, so leaving Alex in the loving hands of his Gamma Carol, and Eric, I took Tessa with me to a very important preschool board meeting. She was a champ, and colored and played quietly, while we finished up our discussions.
Once home, Tessa went to bed, and Alex, Eric and I watched an episode of Dr. Who before we all dragged ourselves to bed.
What a day...what a day...
Posts
You are in my thoughts and my prayers.
ReplyDeleteyvette Mahaffey
Sara,
ReplyDeleteYou are an amazing woman! Alex and Tessa are so lucky to have you! I think about your family everyday, I hope and pray that things are on their way to the positive, and can't wait to see pictures of Alex camping!
Jennifer Richardson
Eric, Sara, Alex and Tessa,
ReplyDeleteWe do not know each other but because of my connection with Gale and John(RIP) I feel as if I am a part of your family. Thank you for sharing the ups and downs of Alex's struggle through this blog. I try to check in every day. You are all so strong, how difficult this must be.
I realized a while back that just as my dogs are drifting off to sleep they breath one big breath, as if they are letting go and all is well. Then I realized I do it too, just before I drift off and throughout the day, sometimes in frustration but most often because all is well and I am content. I started smiling and saying a prayer every time I exhaled and Alex is who I think about most.
It makes me so mad that something this horrible has to happen to anybody. I pray for your family to be well and to be able to continue this unwanted adventure with the stamina and grace you have shown thus far.
Much love to all of you,
Carlen
I find a quiet spot every time you post a new entry to your blog so that I can read about what's going on with Alex and with all of you. We think of you and pray for all of you every day, Sara, and wish you weren't going through all of this. Alex is such a brave boy and I hope you'll give him a great big hug from all of us....
ReplyDeleteLove and prayers,
Tracy
Sara and Eric,
ReplyDeleteThis is Heidi, Pat's sister in Colorado. I've been following your blog for some time now. I can't tell you how much I wish that there was some way that I could shoulder your pain for you, even for a short time, just to give you respite. It just seems so overwhelming. I admire your strength, but I sure feel that you've had to display entirely too much of it! My heart breaks for little Alex for what he's had to endure and for what lies ahead. I was thrilled to hear that a match was found, but startled to read your post about all the potential problems. My heart will be linked to all the others that will be keeping vigil for Alex and hoping that all goes smoothly and that this nightmare can end for all of your family.